We have discussed the issue of a deaf couple wanting to use embryo selection to choose a deaf child before, and now the issue is again being discussed in connection with the UK's hopeless mess of a bill that seeks to regulate all human reproduction. The issue is important on several levels and I think worth revisiting. From the story:
Like any other three-year-old child, Molly has brought joy to her parents. Bright-eyed and cheerful, Molly is also deaf - and that is an issue which vexes her parents, though not for the obvious reasons. Paula Garfield, a theatre director, and her partner, Tomato Lichy, an artist and designer, are also deaf and had hoped to have a child who could not hear.
'We celebrated when we found out about Molly's deafness,' says Lichy. 'Being deaf is not about being disabled, or medically incomplete--it's about being part of a linguistic minority. We're proud, not of the medical aspect of deafness, but of the language we use and the community we live in.'Now the couple are hoping to have a second child, one they also wish to be deaf --and that desire has brought them into a sharp confrontation with Parliament. The government's Human Fertilisation and Embryology (HFE) bill, scheduled to go through the Commons this spring, will block any attempt by couples like Garfield and Lichy to use modern medical techniques to ensure their children are deaf.
And here is the crux of the issue:
'Paula is now in her early 40s,' says Lichy. 'Our first daughter was born naturally, but due to Paula's age, we may need IVF for the second.' The trouble is that, according to clause 14/4/9 of the bill, the selection of a hearing child through IVF is permitted, but embryos found to have deafness genes will be automatically discarded. 'This sends out a clear and direct message that the government thinks deaf people are better off not being born,' says Steve Emery, a sign-language expert at Heriot-Watt University.
This point is backed by Lichy. 'It is a cornerstone of modern society and law that deaf and hearing people have equal rights. If hearing people were to have the right to throw away a deaf embryo, then we as deaf people should also have the right to throw away a hearing embryo.'
Her logic is impeccable. The evil act is automatically discarding certain categories of embryos because they aren't deemed good enough. This is eugenics, pure and simple, and it is evil in that, as the woman said, it presumes some lives have greater value than others. And in an age of radical individualism, if eugenics is good from one angle it is just as good from another.
This right to have the baby we want, or not have the one we don't, includes the killing of viable late gestational babies. Indeed, one disgusting doctor is making an international practice of what amounts to infanticide:
This point is demonstrated, somewhat unexpectedly, at Dr Warren Hern's clinic in Boulder, Colorado. Hern is one of a handful of specialists worldwide willing to perform abortions beyond 24 weeks' gestation, the legal cut-off point in most of Europe for terminating a pregnancy. And he is increasingly seeing British women for terminations that would be against the law in their home country, despite the fact that British providers--nervous of entering a legal grey area--refuse to refer them to him.
This is all very disheartening. We are fast becoming a society permeated in ME! I! ME! I!--and it is driving us toward the culture of death. Booth Gardner wants to legalize assisted suicide in Washington, yelling in speeches, "MY life! MY death! MY Choice!" A deaf couple wants their children to be deaf because it fulfills their desire to be part of a subculture, so out go their other embryonic offspring into the medical waste container. Other parents demand a child without disability--even if it means resorting to late term abortion or infanticide. If someone experiences a profound brain injury, we take away their food and water based on their quality of life, and call it medical ethics.
What is being lost in all of this solipsism and neurotic obsession with control is the concept of true community. We are not islands onto ourselves but part of a whole. Some of the best things that happen in life turn out to be those things we didn't want and didn't expect. Each and every one of us belongs. None should be considered discardable refuse.
Individual freedom is a very important part of liberty, but it brings with it responsibility. We also have to consider our place within the greater whole. And that seems to have been lost in the stampede to fulfill ourselves no matter what it might to do the weak and vulnerable--even our own children.
Culture of death? It is found at the crossroads of solipsism and radical individualism.
Labels: Engineering a Culture of Death